Renal Cell (Kidney) Cancer

What does NED mean after partial nephrectomy surgery?

Post Partial Nephrectomy - NED I am 3 weeks post-op. Had Stage 1b Grade 3 Papillary Renal Cell Carcinoma. Had to advocate for myself through the shitstorm that is the healthcare system in the U.S. Daunting and tiring. I had a 2-week follow up appointment to review my surgical pathology. Still hurting, I show up at 7:40am for my appt. To be informed by the CRNP that they didn’t have my results. No one could call and tell me not to come and reschedule my appt. This was last Friday. Yesterday, Tuesday, I left a message for the oncologist asking if there were whereabouts of my results. He didn’t have the decency to phone me. He sent an email to MyChart. My markers were clear, and the mass removed stating “this is considered cured” followed by “you will need a CT Scan in 6 months just in case it comes back” (exact wording). So how am I “cured” but it might “just in case come back”? The proper verbiage is NED “No Evidence of Disease”. I’m having a difficult time cause I feel like I was treated like crap. I had to chase down my pathology report as the oncologist didn’t even have the decency to afford me a conversation where I could address questions/concerns. I had an appointment with my primary care physician today who answered all my questions and agreed I was not treated well. After my six-months scan I will be going to a new specialist. BTW the oncologist who performed my surgery is leaving the hospital where I was being cared for in two months. No excuse for his poor conduct. I’m not looking for a best friend or someone to hold hands with, just a reasonable expectation to be treated fairly. It’s bad enough being in the whirlwind of a cancer diagnosis, feeling sick, having surgery and handling all the healthcare bureaucratic crap we are saddled with. I’m having difficulty feeling “happy” about my NED result. Everyone around me says “you should be happy…”. I feel worn out and exhausted and confused and lost. And in case you didn’t know, “Achieving NED is a promising sign. It means that cancer cells are no longer detectable, but it doesn’t necessarily mean your cancer is cured. Cancer cells may still be present in low amounts.” From Healthline.com I am glad my markers are clean and I hope for my future scans, bloodwork and x-rays to be as well. But right now I don’t feel like jumping up-and-down.

How does kidney cancer treatment affect heart health and what can I do?

Cardiovascular care is vital for kidney cancer patients and survivors. Learn how to manage heart health risks during and after treatment. https://outcomes4me.com/article/why-heart-health-matters-after-renal-cell-kidney-cancer/

Having nephrectomy tomorrow - how do you cope with surgery stress?

My nephrectomy, (praying for a partial) is scheduled for tomorrow morning. Have to report tomorrow morning no later than 6:00. My personal life decided to add to my stress. One of my cats had a very severe asthma attack yesterday morning and is going to board at the vets while I’m undergoing surgery and recovery. On the way back home my car gave out. The stress last night was unbelievable. I’m a widow and live alone with my 2 cats. The worst and longest night of my life. Did lots of things and decided to let go of everything and just devote my energy to fighting the best that has invaded my body and my life. The dam beast is even trying to take my sanity as well. The SOB is going to have a battle if it intends to F with me. Community, sorry for the long post. Just needed to say what was going through my being.

Does Keytruda cause restless leg syndrome or RLS symptoms?

Keytruda and rls

How do you cope when family doesn't understand your cancer fears?

Im having liver surgery in a few days to remove the rcc that I spread from my kidney. Ill be doing keytruda after that. Im pretty scared. My family doesn't act like its a big deal. It is to me. This is so hurtful. Right now it feels worse than actually having the cancer come back.

What does sarcomatoid RCC mean and how do you manage severe flushing?

Hello. My name is Helen. I was diagnosed with sarcomatoid metastatic RCC in November 2018. I’ve been in treatment ever since (Optivo), remission for past few years. 2 questions 1. Can anyone explain the sarcomatoid piece of my diagnosis in layman terms? Just can’t seem to grasp it and the reason I’m in treatment for life 2. Does anyone have severe flushing? I’ve tried everything I know of to help but so far nothing has worked well. The fluid just seeps up through my pores and soaks me

How do you cope with immune-related side effects from Keytruda and Lenvatinib?

Stage IV FHdRCC Update since 3/5/26: irAEs after 3 rounds of Keytruda & 7weeks of daily Lenvatinib my husband was hospitalized March 8-10 with pain; inflammed gallbladder & liver. Which after 2 days pain was gone and labs trending better, but scans show gallbladder problems. On 3/23 labs show great liver BUT thyroid quit working due to cancer drugs so stated on thyroid replacement meds. On Mar 30-Apr 1 back into hospital with same problem. Yeah more immune realted problems from Keytruda and Lenvatinib. Now scheduled for gallbladder removal April 9th as HIDA scan shows dysfunction of gallbladder. Oncologist does not "think" gallbladder is immune related with Lenvatinib. I even hand him a 3/14/2026 Oncology Journal artical "Lenvatinib induced Acalculous Cholecystitis" which is exactly what my husband was diagnosis with. Not sure Oncologist read it. So sacrificing gallbladder to continue on full dose of Lenvatinib...if the cancer doesn't destroy the organ the cure does. The fight continues. I did learn how to put the 72 page hospital summary into AI for discussion and "more information". AI summarized the situation and gave me great talking points for the Oncologist and GI and Internal Medicine Doc. which I was ablevto go over with the 3 docs regarding the surgery And the irAEs inflammation. I will use AI in the future it is an additional tool for understanding.

How do you stay strong through metastatic kidney cancer treatment?

I was diagnosed with Clear Cell Renal Cell Carcinoma in February, 2016. I was 53. I had 10% of my right kidney removed in Alexandria, LA. In November, 2018, it had metastasized to my spine. I had surgery to remove as much as could be removed. This surgery was done in Shreveport, LA. I opted then to go to MD Anderson in Houston, TX. I had radiation on my spine and iliac bone. In 2021 after taking the Maderna shots for COVID it moved to my left femur bone. I had radiation. It then moved to my right femur bone. I had radiation. In March of 2023, I had a light stroke that did not cause me any lasting problems. In December 2023, I broke my right femur bone. In 2018, I was given Votrient, a target therapy drug, which I took until January of 2023. I was given Cabometyx which they said caused my stroke so they immediately changed me to Linvema and I began taking Keytruda IV every three weeks. After a year of Keytruda, I was taken off of it due to side effects. I am still taking Lenvima. My cancer has been quiet as they say for two or three years. I totally believe in the power of prayer. God has gotten me through all of this, along with my husband, children, family, church family, community, and my awesome team of doctors at MD Anderson. I would not want to go to any other Cancer Center. MD Anderson in Houston, Texas is absolutely world known and the best. I pray for all of you dealing with this cancer. Most importantly, allow Jesus to walk with you through this journey. Your salvation is the most important decision you can ever make. We can endure anything when we know that we have a heavenly home waiting on us should our cancer win the battle. I honestly do not give the cancer that kind of acknowledgment. Only God knows when we will draw our last breath. Remember, as my husband reminds me quite often, “there is no tag on your toe right now.” Don’t stop fighting. I am nine years fighting and still going strong.

Can you have liver surgery for kidney cancer that spread to liver?

Im having liver surgery in 2cweeks for rcc in my liver.

Two Different Cancers at 73 - How Are Others Managing Multiple Diagnoses?

At age 73 I was diagnosed with RCC in February 2024 and also Neuro Endocrine Cancer (NET). 15 inches if small intestine removed and resected. NET cancer remains as the nodules left would complicate my digestive system if removed. Oncologists tell me it is a slow growing cancer and monitor it with quarterly blood work, 6 month CT scans and 6 month PET scans. So far no major issues or symptoms. The RCC resulted in a total left kidney removal. Scans every 6 months. Finished one year of Keytruda in May 2025. Now taking thyroid meds as Keytruda effected my thyroid. Last GFR 57 and have proteinuria. Nephrologist monitoring and dietician has recommended foods to avoid. Considering everything, I am feeling really good and have awesome family support.